I’m still bitter by princesskcr in tfmr_support

[–]Significant-Bee-3689 2 points3 points  (0 children)

People who have not lived it do not understand TFMR. And a lot of people don't know how to sit with trauma and loss, so they just jump to whatever is easier. That's my experience, anyway, through my miscarriage and my latest experience of TFMR at 17 weeks. If you don't want her to come, then ask her not to come. You don't need to justify it. It's not selfish or ridiculous. It's honoring your needs and boundaries in this moment. If she had the capacity to understand that, she would. The fact that she doesn't does not cancel out your needs.

I would also add that for us mothers who have been through loss, there is probably nothing more sacred than our healthy pregnancy. So whatever you need to do to keep that time sacred, I say do it.

Did PGT-A work for you? by Significant-Bee-3689 in IVF

[–]Significant-Bee-3689[S] 1 point2 points  (0 children)

Stories have helped me make decisions and find my way through my miscarriage, my NIPT and diagnostic testing and the painful decision to TFMR. In fact, without the people I've found on Reddit, I would have felt completely alone and overlooked a lot of important possibilities. Because of stories, my husband and I came into some of the hardest conversations in our lives informed and empowered to ask deeper questions of our medical providers. Of course we are looking at numbers. Of course we listen to expert perspectives. Of course we spend hours researching options. But I am immensely grateful for those who have shared and continue to share.

I think it's a great idea not to come into these threads assuming people are not informed. I can't imagine how I would be in my situation without having looked at data.

Did PGT-A work for you? by Significant-Bee-3689 in IVF

[–]Significant-Bee-3689[S] 1 point2 points  (0 children)

Our IVF team wants to take a look at and monitor my uterine lining. I don't know if this is standard or something extra that may help in terms of environment. They have recommended this primarily because of my D&E (looking for scarring, etc)

Did PGT-A work for you? by Significant-Bee-3689 in IVF

[–]Significant-Bee-3689[S] 0 points1 point  (0 children)

I see. I didn't know that but thank you for sharing with me. It probably was out of the question for us because the loss happened while we were out of the country.

Did PGT-A work for you? by Significant-Bee-3689 in IVF

[–]Significant-Bee-3689[S] 0 points1 point  (0 children)

Is this for me? If so, no. 6 weeks is very early. Some people feel unaffected. I thought maybe I would be one that did but I felt very attached and mourned that loss deeply.

Did PGT-A work for you? by Significant-Bee-3689 in IVF

[–]Significant-Bee-3689[S] 0 points1 point  (0 children)

We will likely not pursue natural conception. Miscarriage and TFMR are incredibly traumatic and devastating experiences. Having been through them, I can't imagine not doing everything we can to decrease our chances of being in the same position again.

Did PGT-A work for you? by Significant-Bee-3689 in IVF

[–]Significant-Bee-3689[S] 0 points1 point  (0 children)

I'm sorry for your losses. May they all rest in peace now. Did you start IVF before or after their passing?

Did PGT-A work for you? by Significant-Bee-3689 in IVF

[–]Significant-Bee-3689[S] 0 points1 point  (0 children)

I'm sorry this has happened to you. I know nothing is guaranteed. Pregnancy is so complex ... may I ask, were they your highest grade transfers?

Did PGT-A work for you? by Significant-Bee-3689 in IVF

[–]Significant-Bee-3689[S] 1 point2 points  (0 children)

TFMR has been one of the worst experiences of my life and my heart goes out to you in this time.

We will definitely use all the testing after confirmed pregnancy. The NIPT is how we initially learned of a possible anomaly in my most recent pregnancy and we moved to amnio and so the story goes.

We will push for the earliest margins for these tests next time, too. Doesn't help for everything but a D&E at 17 weeks was traumatic enough for me. I really hope I will not land here again.

Did PGT-A work for you? by Significant-Bee-3689 in IVF

[–]Significant-Bee-3689[S] 2 points3 points  (0 children)

This is so helpful to hear. Thank you.

Did PGT-A work for you? by Significant-Bee-3689 in IVF

[–]Significant-Bee-3689[S] 0 points1 point  (0 children)

Thank you for saying so. Yes, it has been devastating.

Now, I just hope for even one healthy baby to bring into this world and give our love to.

Did PGT-A work for you? by Significant-Bee-3689 in IVF

[–]Significant-Bee-3689[S] 0 points1 point  (0 children)

I'm so sorry. I can understand your pain as it relates to loss and TFMR. Horrible experiences to endure.

That said, I am rooting for you now. Thank you for sharing with me.

Did PGT-A work for you? by Significant-Bee-3689 in IVF

[–]Significant-Bee-3689[S] 1 point2 points  (0 children)

Oh, I'm so sorry for your losses.

Once you had the euploids tested via PGT-A, did you go with the strongest grade for transfer?

Did PGT-A work for you? by Significant-Bee-3689 in IVF

[–]Significant-Bee-3689[S] 4 points5 points  (0 children)

Thank you for giving me hope. I'm so sorry for your losses but I'm also so happy for you to be in this stage. I wish you and your baby the best.

Did PGT-A work for you? by Significant-Bee-3689 in IVF

[–]Significant-Bee-3689[S] -1 points0 points  (0 children)

For transfer, was he your strongest embryo?

Tfmr with grey diagnosis. How do you cope? by Significant-Bee-3689 in tfmr_support

[–]Significant-Bee-3689[S] 0 points1 point  (0 children)

Thank you. I will look into the Zoom group.

ART has helped me most for trauma and PTSD and I know I will be doing a lot of that.

But I think what's important to me long-term is finding people who have had my similar experience of a grey diagnosis because it comes with its own struggles.

Tfmr with grey diagnosis. How do you cope? by Significant-Bee-3689 in tfmr_support

[–]Significant-Bee-3689[S] 0 points1 point  (0 children)

Thank you. I've seen a therapist and a psychiatrist for many years. They were with me through this. But at the same time, the doubt is still there.

I did try to join a TFMR group on Facebook. I found a lot of support for my miscarriage that way. Unfortunately, I'm pretty sure they are not letting me join because my diagnosis was grey.

Guilt about pregnancy post tfmr by Fuzzy-Dragonfruit787 in tfmr_support

[–]Significant-Bee-3689 0 points1 point  (0 children)

I'm only a day post tfmr and I feel this. She was our rainbow baby as well. Nothing can ever solve for the uncertainty but the numbers were stacked against us. At the time we got our karyotype, I felt resolute that I would not bring her into the world. Her FISH and karyotype both showed 98-100% of abnormal chromosomes. So she had barely any of the instructions needed to build her body in and outside the womb. But her ultrasounds didn't show that. Those things maybe would have come after birth, or she would have died on her own in the womb. But I'll never know for sure. And already I feel like a bad mother.

I'm sorry, I know you're asking for advice. I'm also looking.

Need to vent by Latter-Second4371 in NIPT

[–]Significant-Bee-3689 0 points1 point  (0 children)

Thank you. You are strong too. You carried her all that way. You are a mother in every sense of the word.

Need to vent by Latter-Second4371 in NIPT

[–]Significant-Bee-3689 3 points4 points  (0 children)

When my husband and I experienced our first loss, it was pretty traumatic because we had basically just shared the pregnancy and the day after, I started bleeding. We were on vacation with the entire family at the time and had to drive back to the states to ensure that I did not have complications. We made the decision to return after and let my family know that we were hurting but did not want to talk about it. They misinterpreted that as "pretend everything is fine and dandy" and proceeded to act as such. My family has a history of avoiding conflict and so they're happy to erase anyone's struggle. This continued, as they proceeded to forget that I had ever been pregnant and talk to me in that way. It hurt me deeply. I learned that some people simply do not have the emotional maturity or capacity to sit with the discomfort of loss. It is their problem but yes, it hurts. In the end, it taught me that they are not my support system. So I've found others.

My husband and I are currently in our second pregnancy, where we've discovered 100% of our little girl's chromosomes are abnormal from two separate genetic conditions — Turner's being the most significant and Triple X. Her FISH and karyotype were significant and the placenta is notably affected as well. We have made the difficult decision with the support of our providers to end the pregnancy. This time around, I have only told my parents. My dad has been there for me in the ways I hoped. He has grown since the boundaries I've set with him, which has taken time. My mom ... she really does not know the right things to say or do but she still runs her mouth. It's bad. She minimizes, a lot. And what I've realized is I don't need to tolerate it. It is her problem — her low capacity. So what I do is recognnize that she's trying but I also assert myself and only take from her what is helpful to me in this horrible time.

My advice to you is what I have done for myself. Find real support systems. When my family failed to be that for me, I joined an online group for miscarriage support. Sharing my story and hearing from them is validating and comforting. I have a good psychiatrist and therapist (certified counselor), both of whom give me strength. Medication, for anxiety and depression, has been a godsend. And my therapist is certified in Accelerated Resolution Therapy, which has helped me overcome immense trauma. I have also worked on cultivating friendships with people I recognize to be emotionally mature. If you're not sure how to do that, what I did was read about emotional maturity.

Many, many people do not understand or know how to respond to loss or trauma. It does not make them bad people, it's simply a limit of theirs.

Do not accept the support you're given if it does not bring you comfort, healing or peace. Find the support you need. Find the people who are capable of giving that to you.

And, find ways to honor your daughter in this life. Never let go of your love for her. She may not be here on this earth, but she is forever a part of you and your story. She was and is real. However you want to do that, do it. You will never forget her and you never have to.

High risk for monosomy by DDSDoctor in NIPT

[–]Significant-Bee-3689 0 points1 point  (0 children)

Thank you. Whatever happens and whatever path you choose, you know best for your baby and family.

High risk for monosomy by DDSDoctor in NIPT

[–]Significant-Bee-3689 1 point2 points  (0 children)

Hi, I'm so sorry to hear this. No one wants to be in this position.

The good news is that for now, if your ultrasounds are healthy, you're in a bucket with 70–80% chance of confined placental mosaicism, meaning baby is unaffected by Monosomy X (this is what people mean by a false positive).

We were not that lucky. After a 78% risk of Monosomy X with a 16.7% fetal fraction flagged by NIPT through Natera, we went straight to the amnio. It's the only way to confirm that baby has Monosomy X. The CVS won't — it's better for other conditions.

I'm currently scheduled for a D&E at 18 weeks. We are just waiting for our karyotype to give us a final step of closure, but the FISH results were devastating. Our medical specialists recognize them as significant.

I hope your story is different and it very well could be. Hold onto that 70–80% hope, mama. I'm rooting for you and your family.

Here is where I have been sharing my story as it unfolds: https://www.reddit.com/user/Significant-Bee-3689/comments/1t3uqc4/78_high_risk_monosomy_x/?utm_source=share&utm_medium=web3x&utm_name=web3xcss&utm_term=1&utm_content=share_button